Open Cervicocranial dysfunction, neuroinflammation and infection in ME/CFS compared to healthy subjects, Bragée & Bertilson [MEPRO study]

[Anna H]

Bragée Clinic in Sweden is planning a study looking at 'Craniocervical dysfunction, neuroinflammation and infection in ME/CFS ws healthy controls' Jonas Bergquist from OMF's research center in Uppsala, among others.

ETA:
The study will include 80 patients from the Bragée clinic with an ME/CFS-diagnosis (the Canadian consensus criteria are used) and 40 healthy controls. They will perform blood tests, lumbar punctions, clinical examinations, surveys, MRI examinations etc. Blood and cerebrospinal fluid will be analyzed for signs of infections, inflammation etc.

The study is awaiting approval, but in the study protocol retrieved from the Swedish Ethical Review Board they state that they will offer 20 randomly chosen ME-patients and 20 controls to fly to London for an upright MRI at Medserena Clinic, since no upright MRI's are available in Sweden.

For each person the flight to and from London and the upright MRI examination are planned to take place in one single day!
This is the part of this study that worries me!



(the application and study protocol in Swedish)

https://www.dropbox.com/s/t7r15rqibroe45i/Bragee_Bergquiststudie .pdf?dl=0

Even the Ethical Review Board questions the need to fly severely ill patients to another country, and to fly there and back without an overnight stay planned or anything. PEM isn't even mentioned in the study protocol, which is quite alarming concidering the enormous exertion such an endeavor would be.
Rather than there being a potential risk of harm, I would say there are guarantees of harm being done.

And the head author of the study protocol, Bragée himself, is leading one of Sweden's few ME-clinics!!
I find this extremely scary and disconcerting
Add to that the fact that it's a joint effort with an OMF-financed research center...

I very much hope they don't get approval to perform this extremely reckless experiment.

ETA :
Here's a link to a cleaned up Google translation of the study protocol:

https://docs.google.com/document/d/111YVl4vxgO_Pwvd5GK2MBfncIHCnZS1wuo2IepyxABM/edit?usp=drivesdk

And here to the comments from the Swedish Ethical Review Authority, and answers to them by Björn Bragée :

https://docs.google.com/document/d/111YVl4vxgO_Pwvd5GK2MBfncIHCnZS1wuo2IepyxABM/edit?usp=drivesdk

(Some medical or anatomical terms may be "lost in translation", and the Swedish language in the study protocol is rather poorly to begin with, but hopefully it's readable at least.)

Here is a translation of a summary in the application :

"The overall aim of the project is to describe clinical, radiological and laboratory findings of the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Furthermore, to compare these with findings from healthy test subjects to increase knowledge of possible causes of the disease and thereby improve the care given to ME/CFS patient.

ME/CFS is also known as chronic fatigue syndrome and is referred to as a neurological diagnosis with ICD code G93.3. The disease is defined as a syndrome based on established criteria (the "Canada criteria") and the absence of other explanations for the often disabling fatigue and exhaustion and worsening of symptoms triggered by exertion is characteristic of the syndrome. The cause of ME/CFS is unknown.

The number of people in Sweden with ME/CFS is estimated to be more than 40,000, most of which are very debilitated and homebound. Quality of life measured by accepted methods is the lowest among all patient groups, including severe diseases such as cancer and systemic diseases.

The need for knowledge is great, not only for patients and the Healthcare system, but also for principals, patient representatives, insurance funds, social councils and other authorities.

Conditions commonly associated with ME/CFS include fibromyalgia, sensitive bowel syndrome (IBS), susceptibility to infection and long-term problems following various traumas. However, psychiatric coexistence is not ascertained. Treatment of ME/CFS is based on symptoms and consists of training and instruction in activity adaptation, pacing.

In some cases, surgical treatment of the spine has been curative but this lacks scientific support.

Bragée ME Center is one of only three specialist clinics in Sweden that has been assigned by the county council to meet referred patients with severe problems. The queues to the clinic are long, with referrals mainly from primary care throughout the country. At Bragée ME center, about 80 new assessments are being carried out each month, which results in a uniquely large and unified patient cohort that can be evaluated.

Based on a review of the current research for ME/CSF and our experience with thorough medical, clinical, radiological and laboratory examination of over 200 patients with established ME/CFS, we have come up with a new scientific hypothesis, and also found other issues that this project aims to clarify.

The clinical experience at Bragée ME center is that a significant part of patients with ME/CFS have collagenopathy-related motility/weakness in ligamentous structures and many patients have MRI structural changes in the transition brain - cervical spine.

Our new hypothesis is that a significant proportion of patients with ME/CFS may have problems with constriction in the craniocervical area which can lead to disruption of the cerebrovascular flow and thereby cause neuroinflammation.

Our study aims to identify to which extent patients with ME/CFS, compared to healthy subjects, have findings related to injury and /or other signs of distress in the lower part of the brain and/or upper part of the spinal cord, i.e. cervical spine.
We also want to find out if there are signs of neuroinflammation and/or infection in the blood and cerebrospinal fluid and if there are disturbances in the so-called interoceptive signaling system in the central nervous system.

Our measurement methods (variables) consist of surveys, thorough physical examination, radiological examination of the brain/spine and laboratory tests, including blood and cerebrospinal fluid."

ETA:
(Google translated with major errors corrected. I'm not well versed in anatomy and medicine so there might still be some errors)

" 3.3 What is the scientific purpose of the project? *
The overall aim of the project is to describe clinical, radiological and laboratory findings in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Furthermore, to compare these with findings from healthy
test subjects to increase knowledge of possible causes of the disease and thereby achieve improved care for this group of patients, whose quality of life measured by accepted methods is lowest among all patient groups, including severe diseases such as cancer and systemic diseases.

The knowledge gap regarding ME/CFS refers to its pathophysiology, which means that a cure and/or treatment that provides substantial symptom relief is lacking .
A research problem in itself is that registers are considerably large cohorts of patients with ME/CFS and their clinical, radiological and laboratory findings are missing.

Our hypothesis is that the disease ME/CFS in a significant proportion of patients with ME/CFS can be explained by traumatic and/or other changes in the craniocervical area which may cause cervical cranial
dysfunction and disturbance of the nervous system and cerebrovascular flow, including elevated intracerebral pressure.

A sub-hypothesis is that there are signs of neuroinflammation and/or infection in the blood and cerebrospinal fluid and that there is interference with the so-called interoceptive signaling. We will therefore, based on clinical examination, assess nerve impacts and on examination of radiological images of brain and spinal cord assess possible constrictions in the craniocervical area.

We will also measure the width of the optic nerve to get a neuroradiologically correlate to pressure conditions in the brain/spinal cord space measured at spinal puncture. Through analysis of blood samples and samples of cerebrospinal fluid we will look for signs of neuroinflammation and/or infection. "

3.4 What scientific questions are being raised? *
Regarding patents having received diagnosis of ME / CFS at Bragée clinic and healthy subjects;

1. What is the correlation between diagnosed nerve impact, pain and distress and MRI scans of the cervical spine and brain?

2. In what proportion of patients can we see the following findings ?

a. Neurological deviations in a clinical examination
b. Hypermobility in a clinical examination
c. Elevated intracranial pressure measured with siphon at spinal puncture

3. What proportion of MR brain and/or cervical spine scans show the following?

a. Tonsillectomy
b. Occurrence of construction of the neck
c. Elevated intracranial pressure measured from the optic nerve diameter

4. What proportion of patients show evidence of the autonomic nervous system being affected in a clinical examination, measurement of sweating, heart rate, temperature and cardiac activity during rest, stress and position change?

5. What percentage of patients show signs of neuroinflammation in spinal fluid?

6. What proportion of patients have specific antibodies in the spinal fluid and serum?"


" Clinical examinations
Surveys:
Questionnaire included in the National Register for Pain Rehabilitation,
NRS initial background issues,
RAND 36r,
EQ-5D (EuroQol 5 dimension),
MPI, (Multidimensional Pain Inventory),
HADS, Hospital Anxiety and Depression Scale,
Canada criteria,
ME symptoms Questionnaire,
The clinic's questionnaire Including pain sketch.
Örebro Musculoskeletal Pain Questionnaire,
Questionnaire on Autonomic Symptoms,
MAIA, Multidimensional Assessment of Interoceptive Awareness,
Fatigue severity scale, Swedish version,
PIPS Psychological Inflexibility in Pain Scale [13],

Objection drawing [14, 15]
Medical history and clinical examination.
Complete medical history.

Careful clinical examination including walking test, tilt test (electronic tipping board) quantitative sensory threshold measurements.
Mobility according to the Beighton model.

The examinations are harmless, and stimulated cold and heat remain below the thresholds for tissue damage, and
can also be interrupted by the patient momentarily in case of major discomfort."

Edit: for clarity and to add links

 

[Peter T]

If the scans and any surgery have to be done in another country wouldn’t it make sense to select subjects in that country too?

 

[adambeyoncelowe]

If the scans and any surgery have to be done in another country wouldn’t it make sense to select subjects in that country too?

You'd think...

 

[Andy]

If the scans and any surgery have to be done in another country wouldn’t it make sense to select subjects in that country too?

It might be thought that the additional challenges of recruiting outside your home country might be more than actually carting your selected patients around between countries? And/or it's easier for them to get ethical approval this way? I have no idea, just guessing.

 

[Peter T]

It might be thought that the additional challenges of recruiting outside your home country might be more than actually carting your selected patients around between countries? And/or it's easier for them to get ethical approval this way? I have no idea, just guessing.

In terms of ethical approval there is generally in the UK a mechanism to get joint health and academic ethical approval in one go, but by recruiting overseas they would presumably need ethical in both the UK and Sweden. However that can not be that difficult given it is not uncommon for clinical drug trials to happen with study cohorts drawn from a number of countries.

A possible solution would be for this project to work jointly with a UK academic institute.

I can not imagine myself participating in a research project requiring international travel. It would probably be too much of a challenge to even considering participating in anything more than 25 miles away.

 

[Anna H]

Here's the basis for their hypothesis that there is interference with 'interoceptive signaling' in ME.
Even they seemingly admit to it being far-fetched in a way, with their use of wording: 'may have' and 'if... one might suspect'.

google-translated, my bolding:

"Patients have difficulty perceiving cold and heat in a normal fashion, this is included in the criteria description and is also reported by many patients.
Patients with ME/CFS may have a reduced ability to regulate the difference between
actual stimulus and the prediction that precedes the stimulus, i.e., make a misinterpretation, prediction error, of input signals.
If this is the case, one might suspect that it applies also to other interoceptive and exteroceptive signals, such as muscle fatigue, over-reaction by the autonomous nervous system to positional changes etc. This can then be investigated in future studies."

Is difficulty perceiving hot and cold really part of any diagnostic criteria? I have never heard of this.

ETA:
Here with different wording :

" Patients with ME/CFS may have a reduced ability to regulate the difference between an actual stimulus and the prediction that precedes the stimulus, i.e. to make a misinterpretation of the input signals, which in that case would lead to an unnatural reaction.

For example, that the brain interprets an incoming signal of heat as being likely to lead to sensations of pain later on, and therefore the autonomic nervous system overreacts."

 

[Anna H]

Another excerpt from the study protocol, where they argue that the fact patients need to lay down to relieve symptoms is another reason an upright MRI is suitable. What about orthostatic intolerance?

my bolding:
"Patients included in the study and matching healthy controls are also offered an MRI examination with the possibility of taking multiple pictures in an upright position.
The method of using an upright MRI has become all the more common, as it provides much additional information about conditions, when the body is in a position that causes problems for most ME patients.

One can demonstrate the constriction of the nerve root and craniocervical compression in a physiologically loaded position. [16] The head and musculature contributes with a weight load of about 10-15 kilos, thus you can get a different picture of for example the occurrence Chiari malformation . [17] Patients often state that they assume a supine position primarily because it provides symptomatic relief, not due to fatigue, this would also point to an upright MRI being adequate. No such study has been conducted for ME/CFS.

 

[Wonko]

It sounds like they have a hypothesis, that a significant subgroup is caused by trauma, but that they don't believe it, or why would any responsible researcher risk international travel, probably a day that would wipe out a healthy person, and then flying back, and getting home, the same day.

The only rational conclusion would be that they don't believe their own hypothesis, in which case their motive for proposing this would need to be questioned.

You do not subject people with suspected 'spinal' trauma to this sort of thing unless it is essential to save their lives. You do not subject bedbound people to this in the name of 'research'.

So...what's up doc?

 

[mango]

Is difficulty perceiving hot and cold really part of any diagnostic criteria? I have never heard of this.

Well, we know that Bragée ME Center uses the Canadian criteria. I did a quick search of the Carruthers et al consensus document.

I didn't find anything about "difficulty perceiving cold and heat in a normal fashion".

Below are the bits that I found about related words like "temperature", "hot" and "cold".

"intolerance to heat or cold"

"Neuroendocrine Manifestations: loss of thermostatic stability – subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold;"

"Patients may have alternating feelings of hot or cold, sometimes in unusual distribution, e.g., feet are often cold, fingers may be hot, or the right side may feel hot while the left feels cold, or there may be localized feelings of heat and flushing. Many patients are intolerant of extremes in weather and experience worsening of symptoms. There are recurrent feeling of feverishness and sweating episodes."

"Symptom exacerbation in extremes of temperature
Heat/cold intolerance
Change in body temperature, erratic body temperature, cold hand and feet"

"Patients may have a drop in body temperature with exercise."

A search for "perception" etc in the same document gave the following results:

"perceptual and sensory disturbances–e.g., spatial instability and disorientation and inability to focus vision"

"Perceptual Disturbances: Less ability to make figure/ground distinctions, loss of depth perception or inability to focus vision and attention. One may lose portions of the visual field or one can only make sense of a small portion of it at a time. There are dimensional disturbances in timing which affect the ability to sequence actions and perceptions, and cope with complex and fast paced changes such as shift work and jet lag. Spatial instability and disorientation come in many varieties, with gait tracking problems, loss of cognitive map and inaccurate body boundaries–e.g., one bumps into the side of the doorway on trying to go through it and/or walks off the sidewalk, where the ground feels unstable."

"Nervous system / Sensory [...] perceptual & dimensional distortions"

In the Overview of the Canadian Consensus Document document I found:

"Overload Phenomena: Patients are often hypersensitive to sensory stimulation including noise, bright lights, temperature extremes,"

"Motor and Perceptual Disturbances: Muscle weakness and fasciculations are common. The patient may appear clumsy due to loss of cognitive map, inaccurate body boundaries, poor muscle coordination, and/or loss of balance. Difficulty with depth perception and focusing vision may result in an inability to accommodate walking on uneven surfaces, as well as spatial instability and disorientation"

"Loss of thermostatic stability: Altered body temperature (often subnormal but occasionally febrile), marked diurnal fluctuation, alternating feelings of hot or cold (sometimes with unusual distribution), recurrent feelings of feverishness, and sweating episodes may occur.
•Heat/cold intolerance is common and may be accompanied by worsening of other symptoms."

"Change in body temperature, erratic body temperature, cold hand and feet Heat / cold intolerance Hot flushes, sweating episodes"

"Skin conductivity and skin temperature: The combination of a lower ability of the skin to conduct electrical current in response to visual and auditory stimuli, and a higher skin temperature of fingers indicate a down-regulation of autonomic sympathetic tone"

"Painful vascular spasm in extremities with cold or hot feelings"

In the primer:

"Neuroendocrine: Low body temperature; cold extremities; sweating; intolerance to heat or cold;"

"Neuroendocrine manifestations Recurrent feelings of feverishness and cold extremities, subnormal body temperature and marked diurnal fluctuations, sweating episodes, intolerance of extremes of heat and cold,"

 

[Anna H]

Here's what's listed under 'Ethical considerations' as potential risks. If one didn't know this was a study that involved ME-patients, you couldn't tell by reading this (except for the mentioning of ME-center) :

7.1 What are the risks for the participants taking part in this research project? *

Possible risks are assessed as small. The study elements included in the study are all well established in the health care system and at ME-Center where the study is conducted. MRI examination does not involve ionizing radiation and is harmless and common safety practices are used regarding inoperable electronics or
observed metal. Pregnant control persons are not allowed to participate.

The intended blood sampling volumes are small and do not normally affect a person's health condition and constitutes a volume of less than ten percent of blood donor volume. All blood sampling involves the risk of discomfort and some risk of infection, which is however considered to be very small.
Spinal puncture carries the risk of discomfort, and some risk of infection but with the aseptic technique we use it's considered to be very small.

The volume of 10 ml taken is a fraction of what is produced per day and does not entail any risk. The doctors who carry out the examination are anesthesiologists with long experience with the procedure.
The clinical examination follows a structured template with emphasis on detecting nerve impacts and/or instability in the spine, and tests superficial sensation of puncture and touch, reflexes, nerve tension and includes palpation.

The clinical examination does not involve invasive or manipulative procedures. The examination has been done by the participating researchers on thousands of occasions, is accepted and do not pose a risk of injury or discomfort, besides the Sensitivity test, which can be experienced as a pricking sensation in the skin, and during the superficial palpations and the test of the spine there may be a local and transient soreness.

Blood sampling for research subjects in the patient group can cause some discomfort, pain, swelling and bruises at the sampling site. Otherwise, the risk of complications associated with venous blood sampling is considered small when performed in accordance with current medical practice.
Spinal puncture carries a certain risk of subsequent headaches, and discomfort in connection with the examination, but
even in large materials, the risk of complication is stated as small.

MRI examination is done on the basis of accepted principles and limitations, which means that only persons without implanted or otherwise magnetic material can be examined. The MR camera itself can cause feelings of discomfort and of being cramped, which can be reduced by sedatives.

"Medicalization" of one's own situation is a potential negative effect for those participating in the study, e.g. 'fear of movement' after getting information about spinal constriction or abnormal blood test response they did not know about
earlier. However, the project can be helpful in weighting current issues, identify relevant diagnosis and provide support
regarding appropriate self-care and future treatment. In an educational contact with a healthcare provider this can lead to
increased self-confidence and freedom of action, when you can get an explanation for your problems and knowledge that the condition is harmless. "

And here are the unmistakable fingerprints of Gunnar Olsson, which gives away some of the psychosocial underpinnings buried within this study:

"Medicalization" of one's own situation is a potential negative effect for those participating in the study, e.g. 'fear of movement' after getting information about spinal constriction or abnormal blood test response they did not know about earlier.....
.....In an educational contact with a healthcare provider this can lead to
increased self-confidence and freedom of action, when you can get an explanation for your problems and knowledge that the condition is harmless."

 

[Anna H]

Well, we know that Bragée ME Center uses the Canadian criteria. I did a quick search of the Carruthers et al consensus document.

I didn't find anything about "difficulty perceiving cold and heat in a normal fashion".

Below are the bits that I found about related words like "temperature", "hot" and "cold".






A search for "perception" etc in the same document gave the following results:




In the Overview of the Canadian Consensus Document document I found:







In the primer:

Thanks for checking up on that@mango!

There doesn't seem to be anything in there supporting his claim that it's in the diagnostic description of ME. An inability to regulate body temperature and intolerance to heat or cold are quite the opposite to not perceiving heat or cold, I would argue.
It's of course possible they have met patients with this problem, but maybe that's more an indication that these patients maybe don't have ME, or maybe have some other comorbid condition ?

 

[Anna H]

It sounds like they have a hypothesis, that a significant subgroup is caused by trauma, but that they don't believe it, or why would any responsible researcher risk international travel, probably a day that would wipe out a healthy person, and then flying back, and getting home, the same day.

The only rational conclusion would be that they don't believe their own hypothesis, in which case their motive for proposing this would need to be questioned.

You do not subject people with suspected 'spinal' trauma to this sort of thing unless it is essential to save their lives. You do not subject bedbound people to this in the name of 'research'.

So...what's up doc?

Couldn't agree more!
Yeah, what's really going on here doc?

 

[mango]

I can't remember ever reading about altered temperature perception in ME before (could be that I simply have forgotten). However, I've seen it mentioned in Jen Brea's posts a few times, for example:

I totally forgot to about it but there is another strange (new) symptom that is mentioned in this page. Immediately after surgery (but before I started waking up semi-paralyzed or having breathing problems) I could not tell what the temperature was in the shower. Or at least, it felt like suddenly the water was much, much colder than it had ever been. At its hottest setting, which used to be searing hot, it felt like it was room temperature. For several days, I had to have my husband check the water for me as I couldn’t tell if it was hot or cold.

I don’t know if it was stocking glove as I only ever used my hands but it was still really odd. And then it went away.

Has anyone ever experienced that before? (Altered temperature sensation.)

EDIT: or it may have felt hotter than usual. I actually can’t remember and wil need to ask...only that I had no idea what the temperature of the water really was.

after my thyroid surgery, I lost the ability to tell the temperature of water and had to always have my husband check how hot the shower was before I went in so I wouldn’t burn myself.

 

[JenB]

I can't remember ever reading about altered temperature perception in ME before (could be that I simply have forgotten). However, I've seen it mentioned in Jen Brea's posts a few times, for example:

I’ve only read about this symptom in Chiari I malformation and in small fiber polyneuropathy (SFN), which Annie Oaklander talked about at the NIH conference. I haven’t read about it in ME or in CCI, either. It lasted either for several days to a couple of weeks until thankfully, going away.

 

[JenB]

Thanks for checking up on that@mango!

There doesn't seem to be anything in there supporting his claim that it's in the diagnostic description of ME. An inability to regulate body temperature and intolerance to heat or cold are quite the opposite to not perceiving heat or cold, I would argue.
It's of course possible they have met patients with this problem, but maybe that's more an indication that these patients maybe don't have ME, or maybe have some other comorbid condition ?

Yeah exactly. I don’t think this is the most important question right now, though. What’s clear is that there are people in our community with treatable neurosurgical conditions and it is important that we find them, because they are our friends and “neighbors.” And they have PEM. So, we can both help them and learn something from them.

 

[JES]

It sounds like they have a hypothesis, that a significant subgroup is caused by trauma, but that they don't believe it, or why would any responsible researcher risk international travel, probably a day that would wipe out a healthy person, and then flying back, and getting home, the same day.

The only rational conclusion would be that they don't believe their own hypothesis, in which case their motive for proposing this would need to be questioned.

You do not subject people with suspected 'spinal' trauma to this sort of thing unless it is essential to save their lives. You do not subject bedbound people to this in the name of 'research'.

So...what's up doc?

I'm confused by your message. First of all, they already have observations from 200 patients from being examined in their clinic, which has initiated this study, so it can only be assumed they have already seen something in the MRI images. Secondly, the default position is always to not believe your hypothesis unless it is proven correct. And the way to prove a hypothesis correct is to try to falsify it. The only way you can falsify it is by doing more studies and comparing against healthy controls, which is exactly what they are attempting to do with this study.

Finally, the patients can opt out of the international traveling part. The main study does not include this, it's an extension to the study where 10% take part. I can only assume, but it would make no sense to include severe patients to this part of the study.

 

[Wonko]

I think you may be experiencing confusion because you're starting from the position of trusting people who want to put people like me through something I would regard as very similar to torture - and although mostly housebound I am not severe, I just can't undertake journeys that involve more than 1 or 2 stages, or cope with being in crowded or unknown environments, or ones with noise, or ones that are too big or too small, or are too bright, etc..

I'm moderate, just about capable of functioning independently provided nothing crops up.

According to what you have just posted I'm an ideal candidate (apart from not being from Sweden).

The idea that anyone like me, or worse, would even be asked to do something like that, instantly makes me distrust and suspicious.

I do not read Swedish.

 

[mango]

they already have observations from 200 patients from being examined in their clinic, which has initiated this study, so it can only be assumed they have already seen something in the MRI images.

I've written a bit about this in some of the older threads, for example:

Here's a transcription of what Bertilson said about their preliminary finding on Malou efter 10 (morning show on Swedish TV), 13 May 2019.

Available to watch online here (In Swedish. Geoblocked outside of Sweden).
https://www.tv4play.se/program/malou-efter-tio/11795690

Bo Christer Bertilson, forskningsledare Bragée ME-center

"Bland annat tittar vi på bilder av ryggraden och hjärnan. [...]
Vad vi funnit hos en stor del av våra patienter är att de ofta har förträngningar i spinalkanalen eller i övergången mellan hjärna och spinalkanal, det så kallade stora hålet, foramen magnum. [...]

Det som syns hos i vår population så har ungefär hälften av patieterna har en del av lillhjärnan som tränger ner i det här hålet, mer eller mindre. [...]

[Flödet av spinalvätskan störs], flödet blir inte lika fritt. Och de här frihetsberövande förträngningar kan finnas dels uppe i det här stora hålet eller det kan finnas längre ner på många patienter. [...]

Man kan hypotetisk säga att, om man nu utgår ifrån att en del av de här patienterna har förträngningar, vilket vi ser väldigt ofta, i den grupp patienter som vi har på ME-center i alla fall, så uppåt 90% har nån typ av förträngningsproblematik i ryggraden, i halsryggen. [..]

[Varför?] Det kan vi inte säga. Men många har varit med om nån typ av trauma, alltså trillat eller trafikolycka eller ridit, eller..."

Google Translate:

"Among other things, we look at pictures of the spine and the brain. [...]
What we have found in a large part of our patients is that they often have constrictions in the spinal canal or in the transition between brain and spinal canal, the so-called large hole, the foramen magnum. [...]

What can be seen in our population is that about half of the patients have a part of the cerebellum that penetrates into this hole, more or less. [...]

[The flow of the spinal fluid is disturbed], the flow is not as free. And these freedom depriving strictures can be found at the top of this large hole or they can be further down in many patients. [...]

One can hypothetically say that, now if one assumes that some of these patients have constrictions, which we see very often, in the group of patients we have at ME centers in any case, so upwards of 90% have some type of constriction problems in the spine, in the cervical spine. [..]

[Why?] We can't say that. But many have been involved in some type of trauma, ie fallen or traffic accident or riding, or ... "

 

[mango]

Secondly, the default position is always to not believe your hypothesis unless it is proven correct.

From an earlier thread:

Here's one of Bragée's slides from Ur Samtiden [12 April 2019], about recovery in ME. The title is "But certainly one can be cured", and the last bullet point says "More reports about recoveries after neck surgery". Would be very interesting to know what source(s) that statement is based on?

 

[mango]

About people being free to opt out or decline the invitation to take part in research studies and other experiments. It might not always be so easy for people to say no, even though they have a right to.

One possible reason, for example, is that the contract Bragée ME Center has with Stockholm County Council only allows the patient a certain number of visits before they are to be sent back to their GP/primary care (who perhaps "doesn't believe in ME" and refuses to continue the medication the ME specialist prescribed for you). However, if you are currently undergoing treatment of some kind or if you're in a research study etc it seems there's less chance that you will be kicked out, you might be allowed to stay a patient at the specialist clinic for a while longer.

Please note that this is not hard facts, not written in the contract or anything like that -- it's just an observation I've made listening to discussions among patients.